The Hootline - Toronto KKG Alumnae Ass'n - September 27, 2018

I was diagnosed with amyotrophic lateral sclerosis (ALS) on September 19, 2013, at 41 years old.

The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. It is an unwanted anniversary, a marker of shock and fear, a countdown of the years, months, days, minutes that we have left.

I woke up that day without a clue as to how my life would change. I went through the dreaded needle in the muscle test and the neurologist kept saying, "I'm afraid to say this is quite serious". My husband Travis and I were trying to focus on what the doc was telling us…no tumours...no blockages...sound back...sound brain...nerves going to muscles...motor nerves not affecting sensation...degenerative condition...motor neuron disease...Lou Gehrig's disease…no known reason….ALS...progressive...no treatment…no cure... shortened life...2-3 years…

I must admit, before that day, my awareness of ALS was limited, so of course, we did what the doctor told us not to do after that appointment, we went home and Googled ALS. At that moment, our spirits were crushed.

Of course, this is a devastating tragedy for my family and myself. We had to sell our home to move into an accessible rental. I am losing my body, in a way that is terrifying as day by day there are activities of daily living that I can no longer accomplish on my own. I have lost my career as an art therapist facilitating groups for individuals with mental health and substance use disorders. I am losing control (which is particularly difficult for someone who is known to have control issues!), and we have lost our future dreams. ALS is an illness that is at the forefront of our thoughts 100% of the time.

In 2015 as well as 2017, I was asked to be the lead walker for the Ottawa Walk for ALS. My Kappa Sisters throughout Canada and the US (even China!) rallied to help me raise funds for ALS and although I haven’t seen many of them since University they helped me to acquire over $17,000 for the ALS Society of Canada. My best friend, maid of honor and Kappa sister Heather Smith Nuñez attends the Hudson Valley Walk to Defeat ALS every year, travels to attend ALS fundraisers with me in Canada, and has been a champion on my behalf. Annemarie Brissenden, an active Kappa alumnae travels to attend ALS walks with me as often as she can. The bonds of sisterhood are impenetrable. Delta Delta chapter at McGill University has fundraised for ALS on my behalf, hosting a “Keep Calm and Kick ALS” dinner as well as a dance-a-thon, raising over $2000 for ALS as well as much needed awareness. Without even having met me.

I would like to personally thank all of my Kappa sisters for supporting me by participating in fundraisers to help defeat ALS. I am so proud to be a Kappa and value the power of sisterhood. Kappa lifts me up and gives me hope, where I once had none.

I feel so privileged to be an advocate on behalf of ALS Canada. Due to my illness, I was forced to quit my job immediately upon diagnosis. At that time I was trying to focus on my family, and myself, though something felt missing. It was extremely difficult to leave behind a job that brought so many fulfillments to my life. I was proud of the work I did in giving back to others, and being an advocate for ALS has replaced for me what I have lost in my career. It brings back purpose and meaning to my life. Through advocacy, I found a way back to myself and who I am as a person. Please visit my blog at www.livelovelaughwithcarol.com

In the past five years of living with ALS, my husband and I have come to realize that we are blessed. Our friends and family surround us with love, we have made it a priority to travel while I still am able, and we have been trying to seize the opportunity to make moments matter by appreciating what is really important in life. I have had a chance to reflect on my life and be proud of my accomplishments of giving back and making a difference in this precious world.

-Carol Sharman SkinnerDelta Delta Chapter

Meet Jordana Easterbrook!Jordana is the Beta Psi Chapter Adviser, Advisory Board President and an ex-Officio member of the Beta Psi House Board. She has been working with the chapter since 2013 when she graduated from Delta Delta chapter (McGill University). The Advisory Board currently consists of 12 wonderful advisers dedicated to supporting and guiding the chapter and Jordana is very proud to have the opportunity to serve as their president. As the Chapter Adviser, Jordana works closely with the active women to support them in navigating Fraternity requirements and resources, in addition to serving as a helpful voice for chapter decision-making. Her favourite part of working with the chapter is having the opportunity to mentor young women, during and after their university experience, and she especially enjoys the friendships she has built with these amazing women.

In her personal life, Jordana works in marketing for Deloitte Canada. She is the (mostly) proud owner of two wiener dogs and lives with her husband in the Beaches area of Toronto. She looks forward to many more years of Kappa volunteering and is always happy to chat if anyone is interested in learning more about becoming a volunteer!

Paid Members List (July 1, 2018 - June 30, 2019)- Is your name missing from the list below? It’s not too late to pay your dues and support the work of the Association and the Fraternity! For payment information click here.- Join our Facebook Group for member updates!

Ottawa Citizen - June 15, 2018

ALS kills 80 per cent of sufferers within two to five years, a terrifying statistic for Carol Skinner, on the eve of her fifth anniversary.

Today she uses a walker inside her small apartment — a wheelchair everywhere else — and doesn’t drive or work anymore, or even cut her own food, or wash her own hair. On a good day, she can write her name. On a bad day, there are things she can hardly speak of: “I’m scared to death.”

Peter Sharman would trade places with her in a heartbeat. It is what a father would do for his child.

Since Carol’s diagnosis in September 2013, Sharman, with his engineering brain, has been making notes about what it’s like to be the parent of a child with a terminal illness. The short version runs to 19 pages, parts of which make for a heart-breaking read.

“I remain frustrated that it wasn’t me that was diagnosed,” he writes. “I’d give a lot to take this away from Carol and so often feel regret that it should have been me, because I’ve lived a relatively long, busy and fulfilling life already.”

Carol at age 8, and Peter Sharman in Montreal in the late 1970s. FAMILY PHOTO / OTTWP

We’re on the 21st floor of a west-end highrise, the windows giving way to a breathtaking view of the Ottawa River. It is beautiful outside, tidy and luxurious inside, where he stands relaxed in shorts and sock feet, a few sleeps before another Father’s Day.

Of course he would trade for his daughter’s suffering. It is what a parent does. To protect is to love.

We seldom focus on the parents’ agony in the face of terminal illness, a father’s helplessness. Dr. David Taylor, vice-president of research at ALS Canada, has seen it up close.

“It’s the pain,” he says, “and it’s a different, unimaginable pain. You see in their faces. They’re watching their child go through this and having to consider the notion of the child dying before they do.”

With a trace of an English accent, Sharman is retelling the story of how he and his wife, Louise, were told about Carol’s diagnosis. They were on a cruise on the Black Sea, just outside Istanbul, when a phone message arrived from Travis, Carol’s husband.

There was shock, of course, and tears, the kind a stiff drink doesn’t take away. What, even, was ALS?

They abandoned the second half of the cruise and flew home immediately, despite the couple’s urging to finish the trip.

“I tell you how you compare it: Somebody just died. There’s no difference. Because to me, she had died, in that instant.”

Life was about to change, in ways he never imagined. Partway through Carol’s illness, her brother, Don, died suddenly on the Caribbean island of Saint Martin. Peter and Louise had now lost their oldest child at age 52.

Newly into retirement, his back, meanwhile, gave him loads of trouble, resulting in surgery. He had to give up golf, which he played four times a week, and a beloved sports car, which he couldn’t bend into. Her world was shrinking — “It really tore me apart understanding that she’d never walk again” — and so was his.

They sold the family home in Montreal and moved to an apartment in Ottawa, in large part to support Carol and Travis. Every day, she is on his mind. How could he help but not continually intrude?

“My personality went from type A to type L (for “lost”) — and I don’t feel I’m me anymore. I know others see that and understand a little bit,” he wrote. “But pity is the last thing we need.”

He is a charmer, with these playful eyebrows. Born in England, he survived the Blitz in London during the Second World War and arrived in Canada as a teenager, landing in tiny Ocean Falls, B.C., a beautiful but isolated mill town of maybe 2,000 souls.

“I lost my accent in three weeks.” School wasn’t for him — “I’m the only guy from England who failed English” — but he had a salesman’s touch and a driving ambition. He was soon working in the mill, learning all aspects of the pulp and paper trade.

“I failed Grade 11 but I owned an engineering company. How do you do that?”​In 1961, he was off to Vancouver, where he met and married Louise. Three children followed, then a move to Montreal to start an office for a pulp and paper giant. It would become home. Carol was born seven years after the boys, the best mistake, as they say, the couple ever made.

A Christmas photo of Peter Sharman with his daughter Carol in his arms in 1971. OTTWP

“She’s still so cheeky,” he says. “Still the same. ALS, no ALS, she’s the same as she was at three years old.”

Her teenage years — when she babysat for Montreal Expos great Gary Carter — were a mystery to him.

“Between the ages of 13 and 19, my daughter left the human race. She’d have all these friends over from school, university, at the pool. I never understood a word they said.”

Travel was the family’s lifeblood. He estimates he’s visited 135 countries and once travelled 150,000 kilometres a year, away from home for weeks at a time. To this day, trips — cruises in particular — are a way they best bond with Carol, with wonderful backdrops such as Costa Rica, the Baltics or corners of Asia.

Since her diagnosis, he’s dived into the ALS community. There is no effective treatment for the illness, made famous by baseball great Lou Gehrig. And he’s quite shocked by the lack of government support for research.

Look at the millions spent on heart and stroke, or cancer, or diabetes, he says.

There are some 3,500 Canadians living with ALS every year, a number he thinks is too small to spur big pharma to explore new medications.“Is 3,500 lives a year not worth it? Not worth anything? When you can spend $605 million on the security of Charlevoix?” he asks of this month’s G7 meeting in Quebec.

Sharman accompanied his daughter to a recent meeting of the ALS caucus on Parliament Hill, a group of MPs formed in the wake of the death of Ottawa-Vanier MP Mauril Belanger of ALS. He brought the room to a standstill, his daughter says.

“I consider myself an assistant advocate to Carol.”

His mission now, and it is a big one, is to help create enough awareness of ALS that momentum builds for broader public understanding and more urgent scientific research.​“I guess that would be the best Father’s Day gift. Have a drug for her and let me go.”

Peter Sharman laments the lack of funding for ALS research in Canada. ASHLEY FRASER / POSTMEDIA

The first time we met Carol Skinner in 2015, she was so relentlessly positive, so often smiling in the face of approaching death, the pair of us (writer, photographer) left the apartment holding back tears.

(Strange. Was she not the ailing one?) Three years later, she’s very much alive — surprise, surprise — and still fighting the good fight against ALS.

“I was living as though I was dying,” she said of the early months with the terminal illness. “I got my affairs in order. I gave away things like my high school yearbook and my wedding dress.”

Then got back to living. Last weekend, for instance, she returned to the annual ALS walk, where her teams have raised more than $26,000 during the past four years. Fortunately, Skinner has strong family support, as exemplified by her father, Peter, who has become “an assistant advocate.”

The only daughter in a middle-class Montreal household, Carol remembers her father being absent for big parts of her childhood as he travelled the world as a pulp-and-paper executive.

“He always tested me on geography. He gave me my love of travel and other cultures. He would bring me dolls from all these foreign countries.”Her father instilled a work ethic in the children, she said, which served her well in her career as an art therapist.

She knows how difficult the illness has been on her parents, who had moved to Ottawa, partly to help her with errands and ongoing care and support, not to mention multiple holidays.

“Dad is very sensitive guy on the inside. He comes across as a fun-loving, kind of sarcastic guy, but he’s a softie on the inside and I know it’s breaking his heart.”

ALS is a neuromuscular disease that attacks, in layman’s terms, the body’s central wiring system. Over time, the brain and its main muscles no longer communicate properly, making limbs hard to control. Eventually, speech, breathing and swallowing are affected.​Skinner can now only walk short distances with a walker, and otherwise relies on a wheelchair. She can’t load the dishwasher or lift her arms very high. She now has daily nursing care. But her breathing and swallowing are normal and her spirits, many days, are good.

She continues to advocate for more research funding, pressing MPs to make good on a motion indicating support for ALS federal funds. All the while, she knows clinical trials and experimental drugs likely won’t help her, as she is too advanced with the illness to take part.

So, she’s planning a trip to Tuscany later in the year, ALS be damned. Life goes on.

“You have to be grateful for what you have instead of regret what you don’t have, because then you’ll never be happy.”

ALS, or amyotrophic lateral sclerosis, is a progressive disease for which there is no cure. There are about 3,000 people in Canada living with ALS, with another 1,000 or so diagnosed every year. Unfortunately, about the same number die annually.​In its most common form, it often first shows up as muscle weakness, where people might start dropping things or tripping over their own feet.

​Moore’s cousin, who was diagnosed when he was 45, found that he was dropping his hockey stick. “As it moved its way in, he lost his ability to pick up a drink, to feed himself and then to be able to walk, and eventually affecting his ability to speak and to breathe.”

It’s a “progressive paralysis,” Moore said, and there are only very limited treatments available at the moment, though there are drugs being developed that give her hope. “But it’s likely to be a cocktail that’s going to be required because of the complexity of the disease, and will be very expensive.”

Assistive devices

“We do see people with longevity,” Moore said. “But we also have to keep in mind that often those people also have a lot of assistive devices that enable them to have longevity or help them with that.”

Although his disease progressed very slowly, Hawking also benefited from quality care and assistive technology.

He had a tracheostomy in the 1980s after a bout of pneumonia, which left him breathing through a tube. After he and his first wife divorced, his nursing care was covered by a grant from the United States. He was in a motorized wheelchair most of his life.

In the last few years of Hawking’s life, the only thing connecting the brilliant physicist to the outside world was a couple of inches of frayed nerve in his cheek.

As slowly as a word per minute, Stephen Hawking used the twitching of the muscle under his right eye to grind out his thoughts on a custom-built computer, which could also speak for him.

Access to such communication devices makes a big difference to people living with ALS, Moore said. “You can appreciate that without eye-gaze technology that Stephen Hawking was using, he wouldn’t have been able to communicate to the outside world whatsoever.”

“So if someone’s in need of a medical intervention, for instance, I could be sitting beside you and choking to death – I couldn’t tell you unless I had my eye-gaze technology set up.”

In over half of ALS cases, like Hawking’s, individuals have no cognitive impairment as a result of the disease. “So someone is fully cognizant, fully able to feel but unable to move their body,” Moore said.

The types of assistance provided vary widely across Canada, she said. She also believes that there needs to be more research into the disease to understand why it progresses so slowly in some people, like Hawking, and so quickly in others.

“An inspiration”

To people living with ALS, Hawking was a source of inspiration.

“I was diagnosed at the age of 22, Professor Hawking at the age of 21,” said Eddy Lefrançois, who was diagnosed with ALS 25 years ago.

“At the time of my diagnosis, he had already been living with ALS for 25 years. He inspired me with his continued achievements, even though he was living with ALS. ALS did affect his body, but not his ability to think.”​“I thought he was a brilliant man with a love for life. He seemed to have lived his life the way he wanted on both a personal, and professional level.”

Carol Skinner, who has been living with ALS for nearly five years, notes that the tributes to Hawking didn’t mention ALS before his other achievements. She also remembers Hawking’s humour. “His sense of humour made him relatable and endeared him to popular culture. Though trapped in his own body due to paralysis, a terrible symptom of ALS, Stephen never lost himself,” she said.

“Like Stephen, I was given 2-3 years left to live by my neurologist. This September it will be my 5th year living with ALS. Stephen focused on living, not dying, and I struggle to emulate this part of him every day.”

ALS Canada - Holiday Campaign - December 2017

ALS Canada - Project MinE Campaign - October 2017

“As a person living with ALS, I feel so helpless. Project MinE gives me hope because it allows me to participate in valuable research and gives me my power back as a valued and productive contributor. I believe that international collaboration is so important because it allows research to grow much faster and more efficiently. When we put our minds together without barriers, the impossible can happen.”- Carol Skinner, ALS Canada Ambassador

All this week, we are profiling Project MinE, an international research collaboration to identify the genetic “signature” that leads someone to develop ALS. ALS Canada is proud to be spearheading Canada’s contribution to Project MinE. All donations made to ALS Canada in support of Project Mine are being matched by our partner Brain Canada through the Canada Brain Research Fund, with financial support of Health Canada. Donate today:

Thousands of participants enjoyed perfect weather on Saturday for the five-kilometre Walk for ALS in support of people and families living with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease.

Participants of all ages set out from the War Museum on Vimy Place at 11 a.m., heading west toward the Rémic Rapids area. The westbound Sir John A. Macdonald Parkway was closed for the event.

The local ALS group had set a target of $250,000 for the fundraiser. As of Saturday evening, the total sat at about $170,000. The group will continue to accept donations until Dec. 31. To donate, go to als.ca and click on donate.

The ALS society notes that more than 1,000 people in Ontario have the condition, “many of whom are in the prime of their lives.”

It estimates that the cost of equipment and other care costs can exceed $200,000 per person over the course of the disease. Most of these costs are not covered by government funding or private insurance.

The annual 5 km "WALK for ALS" took place at the Canadian War Museum in support of those effected by amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease Saturday June 10, 2017.

​Ashley Fraser/Postmedia ASHLEY FRASER/POSTMEDIA

Lead Walker Carol Skinner, ALS Canada ambassador walking with her husband Travis and her Live Love Laugh team, behind a military band. Ashley Fraser/Postmedia ASHLEY FRASER/POSTMEDIA

My Speech:​Bonjour, Good Morning.

My name is Carol Skinner and it is an honour and a privilege to be here with you today. In fact, I was told I wouldn’t be.

I was diagnosed with ALS on September 19, 2013 at the age of 41. That day I went in for an EMG, and walked out with 2-3 years left to live. This September, will be year 4.

ALS has yet to steal my voice, and that is why I am here today. For those we have lost, those who are living with, and those who will be diagnosed with this devastating disease.

I have learned lessons living with ALS, the most important being how precious life is and to appreciate everything you have, rather than resent what you don’t.

I am very lucky to have been diagnosed with ALS when I was. Since then I have observed more initiatives geared towards the eradication of ALS than I believe the world has witnessed in over 100 years.

In my short lifetime of living with ALS I have seen:

-In 2014, the Ice Bucket Challenge blew up, it was the first summer of my diagnosis, and I felt worldwide support and people across nations received a greater understanding of the devastation of ALS

-In May of 2015, with the help of Ottawa’s ALS advocate Brian Parsons, the Compassionate Care Benefit in Canada was increased from 6 to 26 weeks

-In July of 2016, a new ALS gene NEK1 was found by Project MinE researchers, this year Canada became the 17th country to join Project MinE, whose large scale whole genome research project will help us to understand the genetic basis of ALS which has the potential to ultimately find a cure

-Even computers have played a role in these exciting developments. In December of 2016, the IBM supercomputer Watson discovered 5 new genes linked to ALS

-There are many promising clinical trials underway, and a new drug, has just been approved by the FDA in the US

-In October of 2016 parliamentarians and senators of All-Parties of the Federal Government came together to form an ALS Caucus. I was fortunate to attend the first meeting and was heartened to see the efforts of sincere and passionate politicians come together to play a vital role in addressing the needs and challenges of the realities of ALS. A big thank you to all of those who participate in the caucus despite their busy schedules.

-In April of this year Motion 105 passed unanimously with a 280-0 vote. The motion states that the House combats ALS via research and awareness and calls on the Canadian Government to increase the funding for ALS research, and to substantially increase national efforts to develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.

-In light of this motion passing, I am waiting with baited breath to see action taken within our government, in particular to include in the next budget, sustainable research funding to combat ALS. In order for this to happen our community must be vigilant in our advocacy efforts and keep knocking on doors!

This is what has happened since I was diagnosed almost 4 years ago, Imagine what could happen in the next few years!

-Shout out to my team the “Living Loving Laughing Walkers” and for all of our generous donors

Thank you so much to the ALS Society of Canada for supporting us and for their relentless work in advocacy and care. Lianne Johnson, you are a rockstar, Tammy Moore, you lead with strength and conviction.

Thank you to the caregivers, who tell us that we are worth it and that it is a privilege to help us. T

Thank you to friends and family who have not given up on us, and who remind us who we are beyond ALS.

Thank you to my amazing Mom & Dad who are always there for me no matter what. They moved from Montreal to Ottawa this spring and continue to give me reasons to keep on fighting.

A special thank you to those of you walking for someone who has succumbed to the devastation of ALS, it cannot be easy to continue with advocacy after losing a loved one, yet that doesn’t stop you from honouring their legacy

And to my community of friends living with ALS, the warriors, “When the world says give up, Hope whispers try it one more time”

Thank you & enjoy the sunshine!!!

Carol: Living, Loving and Laughing Today - ALS Canada - June 9, 2017

Diagnosed with ALS in September 2013 at the age of 41, Carol has surpassed the two to three year life expectancy that was originally given to her by her neurologist. Since then, she has struggled with degenerating muscle function every day – but she refuses to let that stop her.

When she first received her diagnosis, Carol says her only regret was not travelling to Italy. She has since travelled to Italy twice and has learned to make the most of the time she has been given with the people who matter most to her. She continues to make travel plans for the future, despite not knowing if she will be well enough to go. In the past few years, Carol and her husband have travelled to Italy, Denmark, Sweden, Russia, Thailand, Antigua and England, to name a few. She says that crossing these countries off her bucket list has shown her that ALS is not an excuse to give up on her dreams.

Carol and Travis in Portofino, ItalyOne of the biggest struggles for Carol while living with ALS has been accessibility. She says that 50 per cent of her waking hours are spent resting and the other 50 per cent are spent working on accessibility issues: for example, expensive wheelchair batteries that drain quickly and leave her in fear of venturing outside on her own, feeling like an observer of society rather than a participant, and loss of control and independence.​Carol’s diagnosis meant that she had to give up her career, her first home, her ability to drive and her dreams of a future with her loving husband, Travis. However, she is grateful for the time she has been given and the generosity of family and friends.Carol and husband Travis have created a blog to update loved ones on the status of Carol’s progression and to include everyone in the ALS community in her journey. Writing this blog has given Carol a sense of purpose. It has connected her with others in similar circumstances and relieved her of feeling alone in her experiences. On her blog, Carol writes:

If tragedy were to strike tomorrow, what is the one thing you would regret? Make it right. Starting today.

ALS Canada Carol’s relationship with ALS Canada started with the Ottawa Walk for ALS in 2014 as part of the “Living Loving Laughing Walkers” team, which has collectively raised over $17,000 for ALS research and client services. Since then, she has become an ALS Canada Ambassador and has been an advocate at the University of Ottawa, at the ALS Research Forum and at the first all-party ALS Caucus on Parliament Hill. Thanks to our generous donors, Carol has been able to access ALS Canada’s equipment program for practical needs like a new shower chair so she can continue to shower independently despite her weakening leg muscles.–During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

Why Carol Walks and Talks on ALS - Ottawa Citizen - June 8, 2017

Egan: Why Carol walks and talks on ALS — 'I kind of feel like I've been given a gift'​-Kelly Egan, Ottawa Citizen

Carol Skinner was diagnosed with ALS on Sept. 19, 2013, a day she’ll never forget.

I first met her in June 2015, when she had leg braces, caught up with her a year later when she used a walker, and saw her again Wednesday, when she explained the use of three different wheelchairs, lamented an inability to hold a plate or drive a car, revealed she can’t bend over to pick anything up.

So does amyotrophic lateral sclerosis steadily shrink your world. And she is one of the lucky ones.

“The hardest part is that you witness it,” she said of the effects of the terminal neuromuscular disease, which progressively weakens the use of major limbs.

“It’s like your last time driving. Your last time sitting on the couch. One of the hardest was not being able to pick up my cats, holding my friend’s baby.”

After diagnosis, she was told she might have two or three years to live, maybe five. Now she’s in year four and, all things considered, doing rather well, just as she’s seen friends and acquaintances die, and witnessed the demise of MP Mauril Belanger, who had less than a year between diagnosis and death.

Amazingly, her optimism is not impaired. “That’s why I kind of feel like I’ve been given a gift,” she said, sitting in a special chair in the ninth-floor apartment she shares with husband Travis and two cats. The gift is time.

The first year after diagnosis, says Skinner, 45, a former art therapist, there was shock. In year two, came the advocacy work. “It has given me that purpose, that meaning.”

Funny, says, Skinner, but it feels like more progress has been made with ALS in the last couple of years than in the previous 70, when baseball great Lou Gherig lent his name to the illness in 1941. For example:

In January 2016, the federal government extended the Compassionate Care Benefit, extending from six to 26 weeks the period during which caregivers can apply for benefits up to $13,624 to care for loved ones with ALS.

In October 2016, the first meeting of the ALS caucus on Parliament Hill was held. A group of MPs and senators is now focusing its attention on how to improve care, research and funding into the incurable disease.

In February, Skinner and senior ALS officials met with Health Minister Jane Philpott to advocate for ongoing research funding.

In the U.S., the FDA has approved the use of edaravone (or Radicava), a drug that has shown promise with a small sample of ALS patients.

Later in 2017, The Ottawa Hospital will open the Neuromuscular Clinical Research Centre at the Civic campus. It will have a major focus on ALS.

Dr. Jodi Warman Chardon is a neurologist at The Ottawa Hospital and one of the centre’s leaders. “We’re going to be offering international, world-class trials in Ottawa,” she said Thursday, the kind not available anywhere in Canada.

“We’re going to be taking biopsies off patients. We’re going to be linking with the basic scientists to help find the cures of tomorrow.”

She said ALS has been so difficult to treat because it appears to be a “demonstration” of multiple different diseases. Genetic ALS, for instance, has some 30 sub-types and that only represents about 10 per cent of all ALS cases.

This may be an explanation as to why the disease kills some people so quickly yet allows others to live for 10 or more years.

Skinner, meanwhile, is the Lead Walker at the annual ALS walk on Saturday, a five-kilometre loop from the Canadian War Museum. She hopes to raise $3,000 on her own, adding to the $17,000 her teams have raised since 2014. (Donations can be made online at walkforals.ca).

She said living with a terminal disease has made her appreciate the moment, travel more, more deeply understand the sacrifices family are willing to make for her. (Her parents moved from Montreal to Ottawa this spring.)

“I have to think about the day-by-day. I can’t think about what’s coming. That’s just too much.”

She has had many dark days and doesn’t fight the tears. At low points, she says, she and Travis try to “change the scene” by having a glass of wine and putting on ’80s music. “That usually does it.”

The tough part, she says, is the visible slipping away, the knowledge of what’s coming.

“You can see yourself losing pieces, your abilities bit by bit and that’s just devastating. But I’m trying to make the most of it.”​To contact Kelly Egan, please call 613-726-5896 or email kegan@postmedia.com.Twitter.com/kellyegancolumn

Metroland - June 1, 2017

Flag Raising ALS Awareness Month - Ottawa City Hall - June 1, 2017

My Speech:Bonjour, Good Morning.​

My name is Carol Skinner and I was diagnosed with ALS on September 19, 2013 at the age of 41. That day I went in for an EMG, and walked out with 2-3 years left to live.

ALS stole my career, my home, my future, my sense of adventure and my control. ALS is a serial killer that has a hold of me and there is nothing anyone can do about it. It is slowly stealing my physical abilities, bit by bit, day by day, until I become paralyzed in my own body, as my mind remains fully aware of what is happening to me. Even then, it isn’t satisfied, it will keep attacking my body, and will take everything from me, including my last breath.

ALS has yet to steal my voice, and that is why I am here today, to advocate on behalf of all Canadians. For those we have lost, those who are living with, and those who will be diagnosed with this devastating disease.

Why is it important to raise awareness for ALS?

-ALS can strike anyone, at anytime. ALS does not discriminate by age, gender or ethnicity.

-Once thought rare, ALS is in fact quite common. The life-time incident rate for an average person is often estimated at 1 in 400 people (1). Think about that the next time you are on a plane, chances are, at least one of those passengers is likely to be diagnosed with ALS if they haven’t been already.

-In fact, ALS is one of the most common neurodegenerative diseases worldwide (2) and the most common cause of neurological death in Canada (3)

-If this is the case, then why are there not more than 3,000 Canadians living with ALS at one time? Because ALS kills, and kills quickly. 80% of people living with ALS die within 2-5 years (4). This September will be year 4 for me.

-Many other illnesses have developed treatments over the years and those who were once terminal can now live a happy healthy lifestyle with treatment. I just want the same chance and opportunity for those of us living with ALS.

I have learned lessons living with ALS, the most important being how precious life is and to appreciate everything you have rather than resent what you don’t.

I am very lucky to have been diagnosed with ALS when I was. Since then I have seen more initiatives geared towards the eradication of ALS than I believe the world has witnessed in over 100 years.

-The Ice Bucket Challenge blew up in 2014, the first summer of my diagnosis, and I felt worldwide support and people across nations received a greater understanding of the devastation of ALS

-In May of 2015, with the help of Ottawa’s ALS advocate Brian Parsons, the Compassionate Care Benefit in Canada was increased from 6 to 26 weeks

-In July of 2016, a new ALS gene NEK1 was found by Project MinE researchers, this year Canada became the 17th country to join Project MinE, whose large scale research will help us to understand the genetic basis of ALS

-In October of 2016 parliamentarians and senators of All-Parties of the Federal Government came together to form an ALS Caucus. I was fortunate to attend the first meeting and was heartened to see the efforts of sincere and passionate politicians come together to play a vital role in addressing the needs and challenges of the realities of ALS.

-In April of this year Motion 105 passed unanimously with a 280-0 vote. The motion states that our government combats ALS via a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity

-In light of this motion passing, I am waiting with baited breath to see action taken within our government, in particular to include in the next budget, sustainable research funding to combat ALS

-There are many promising clinical trials underway, though they cannot be sustained without funding

It is Walk Season and one of the most important fundraising initiatives for the ALS Society of Canada. Please consider joining a team or sponsoring a Walk for ALS near you. I am so grateful to my team the “Living Loving Laughing Walkers” here in Ottawa.

Why ALS Awareness? because chances are someone you know or love will die from ALS

ALS Therapy Development Institute

National Institute of Neurological Disorders and Stroke

ALS Society of Canada

ALS Society of Canada

ALS Canada Blog - April 2017

When I received my ALS diagnosis in 2013, I was given two to three years to live. I was 41 years old. I had settled into a rewarding career – art therapy – and I was happily married to the man I love. Learning I had ALS and that “there was nothing the doctors could do to help” was devastating. I spent days filled with shock, depression, and a feeling of helplessness. My physical condition was deteriorating rapidly, so my husband, Travis, and I had to move out of our condo to an apartment that was more accessible. That was hard because it meant facing the reality of what lay ahead. But perhaps the most difficult adjustment was having to leave my job. I felt like a core part of me was ripped out of my life. Something was really missing.

Volunteering for ALS Canada has given me back hope and purpose. I have received so much positive feedback from people, and really, I feel as though all I do is show up. I’m the one getting back more than I’m giving! I’ve already beaten the odds, so while I can still speak and I still have enough energy, I just want to keep doing everything I can to help the cause. I am truly grateful for the advocacy work I do as an ALS Canada volunteer because I know that sharing my story will help build awareness, which will lead to more people becoming involved and more funding available to bring us closer to a cure.

When I first signed on as an ALS Canada volunteer, I had no idea where it would all lead. Gathering my team “Living Loving Laughing Walkers” for the Ottawa WALK for ALS in 2014 was really what got me started. The response from people was overwhelming. We exceeded our fundraising goal, and I was comforted by the flood of support around me. I was too sick to participate in 2016, but since my team has been part of the WALK we have raised more than $17,000 for ALS research and vital, practical services like the bath chair that was provided for my apartment recently so I can sit in the shower — I can no longer manage without it.

I remember seeing the Ice Bucket Challenge in 2014 and feeling for the first time that the world had my back. In the summer of 2015, I knew we had to keep the momentum alive so I set up my own Ice Bucket Challenge online. Friends and family in Ottawa helped organize other fundraising events too, including an annual bonspiel, Curling for Carol, that we’ve held for four years in a row now.

The events have been uplifting and inspiring, but perhaps the place I feel I’ve really made a difference is in my role as an ALS Canada Ambassador. Speaking at the University of Ottawa about the impact of receiving an ALS diagnosis, delivering a speech attended by more than 300 Canadian and international ALS researchers at the annual ALS Canada Research Forum last year, and participating in the first meeting of the all-party ALS Caucus on Parliament Hill in Ottawa are positive steps that help raise awareness and capture the attention of key stakeholders. All of this just serves to remind me that I don’t just have to sit back and watch this happen to me – I can do something. It’s very empowering!

Each day during National Volunteer Week, we are posting the story of a different ALS Canada volunteer here on our blog. Each person profiled has different reasons for volunteering, skills they bring to the table, and tasks they are responsible for, but – like all our volunteers — what they share in common is a passion for helping to make ALS a treatable, not terminal disease.

There are the things she can no longer do, like walk without assistance: When she goes out, it is in a wheelchair now. Her arms are growing weaker and she can’t hold anything for long. Her handwriting has grown messy. In December, she had to stop driving.Three years ago this week, Carol Skinner learned that she has amyotrophic lateral sclerosis, a progressive degenerative disease that attacks nerve cells in the brain and the spinal cord; as the cells are destroyed, people lose the ability to walk and, eventually, to speak, swallow and breathe. There is no effective treatment for ALS, sometimes called Lou Gehrig’s disease, and its cause is unknown; it is often fatal within five years.

But Skinner, 44, has chosen to focus on what she can do, not on what she can’t – on what she has and not what she has lost. “I don’t want to waste the precious time I have left,” she said in an interview from her apartment in Ottawa, where the longtime Kirkland resident and McGill University art history graduate makes her home now with her husband, Travis Skinner. “I want to be a voice and an advocate on behalf of people who no longer have a voice.”

And so she has been sharing her story, speaking at ALS fundraisers and research forums, doing her part to raise awareness of a disease that was not much talked about until the ALS Ice Bucket Challenge, with people everywhere dousing with buckets of ice water, went viral in the summer of 2014 – and raised an astounding $115 million.

The symptoms began in early 2013, when her legs wouldn’t hold her up as she tried to skate on the Rideau Canal. At a family wedding in April, she tripped over her feet and fell repeatedly. She continued to lose her balance. With an electromyogram on Sept. 19, 2013, there was the devastating diagnosis.

She had to give up the work she loved, as an art therapist with the Canadian Mental Health Association. She and her husband were forced to sell their home, which had two levels.

Skinner speaks with a disarming directness. ALS “is terrifying to live with. You are watching your body give up on itself. Day by day, I discover activities I can no longer accomplish on my own,” she said. “At one point, I thought it had stolen the essence of who I am as I struggled to find meaning, purpose and a reason to live.”

She has found that meaning — in the decision to share her story. In addition to speaking publicly, she keeps an inspiring blog (livelovelaughwithcarol.com).

“Carol’s ability to articulate the hardships that come from ALS and still find very positive ways of communicating is so powerful,” said Tammy Moore, director of the ALS Society of Canada.

This summer Skinner was recognized for her advocacy work by the YMCA’s Camp Kanawana, where she spent five years. When she started at the St-Sauveur summer camp as a counsellor in the summer of 1990, Carol Sharman, as she was known then, was a self-described “shy girl.” But in the camp environment, she blossomed. She rose through the ranks to become supervisory staff.

“Camp made me into the woman I am today,” she said when we spoke. Through camp, she said, she became a leader. ​Skinner is this year’s recipient of Kanawana’s Pip award, which recognizes the contributions of alumni who best exemplify the camp’s spirit as expressed in its motto: Non Nobis Solum — Latin for Not for Ourselves Alone.

Carol and Travis Skinner on their wedding day, Sept. 29, 2009, in Antigua. Now, they talk about things that few couples their age do — things like death and wills and power of attorney. Photo courtesy Carol Skinner. -

“The purpose of this award is to recognize people who have taken the values they learned at Kanawana and applied them to the larger world,” said Andrew Caddell, who established the award as a memorial to his father, Philip “Pip” Caddell and to his son James Caddell, both alumni. For Skinner, he said, the award is an acknowledgement of her determination and dedication to fight against ALS and of her courage and grace in playing the cards life has dealt.

“What I’ve learned from this magical place — my skills, my confidence, my creativity — all leads back to non nobis solum, not for ourselves alone,” Skinner said when she received the Pip award in July at camp. “I can say I have had an amazing life. This is what the people and spirit of Kanawana have done for me.”

When news spread of her illness, “Kanawanians from all over the world sent me words of encouragement, helped me to fundraise, and showed up to events. They helped me to feel that I was never alone in my illness,” she said. The turnout of 140 at a wine-and-cheese reception honouring her at the camp’s family, alumni and friends weekend this month was the highest in the award’s nine-year history.

If asked to choose a word that best describes Sharmie, her nickname at camp, it would be “spirit,” said Bruce Netherwood, who was her camp director at Kanawana and who travelled from Massachusetts with his family to present the award to her during alumni weekend. “Carol has always had such a joyous, positive spirit.”

When Netherwood, himself a Pip Award-winner, left Kanawana to become director of the South Shore YMCA Camp Burgess & Hayward in Cape Cod, he hired Skinner: In her five years there, she became director of Hayward, the girls’ camp. “As during her time at Kanawana, her caring, thoughtful ways had a profound impact on the campers and staff there,” he said.

But it was only after her ALS diagnosis “that the rest of the country got to see and know this incredible woman. Carol has taken this exceedingly difficult situation and has used it to serve others.”

Skinner and her husband, Travis, will celebrate their seventh anniversary later this month — and she feels blessed to be as in love with him as she is. “We have always had that love,” she said. They talk about things that few couples their age do — things like death and wills and power of attorney. “But it is also a lesson about how you should appreciate love, how you should appreciate what you have in front of you now, because you could lose it in an instant.”

She and Travis are just back from a Baltic cruise, a Christmas gift from her parents and, as she prepares to celebrate her 45th birthday in October with a party, Skinner is grateful for friends and family and a husband she calls “amazing.”

“We just adapt. I have friends who help, a support worker who comes in and helps me get up and get ready in the morning. With help from others and determination, I can continue to live,” she said.

“I have good days and bad days. There are days I can’t button my pants — my thumbs stop working because I am cold or tired — and I always have to plan rest around activities.” There are days she cries — and then feels better for having let the sadness out.

“I want to focus on the positive. … I have been so lucky to have been given a time to appreciate how precious life is.”

In the time since her diagnosis, two colleagues have died. In March, the older of her two brothers died of a heart attack while boating with friends in the Caribbean. Don Sharman was 53. “It happened very fast,” she wrote on her blog. “I think to myself, ‘we should all be so lucky.’”

“I was seriously having some survivor’s guilt,” she told me. “And a good friend of mine said, ‘You’re not finished yet.’ That helped — and made me proud. Not to sound selfish, but maybe I can still do something to help others.”

ALS Canada Newsletter - Summer 2016

YMCA Camp Kanawana Pip Award - July 7, 2016

The inscription for her award reads “For her commitment to the values of Non Nobis Solum in the world beyond camp, shown through her enormous personal strength, determination and dedication to the fight against ALS for herself and others".

I am so grateful for what Camp Kanawana has taught me. It made me into the woman I am proud to be today. I graciously accept this award, but it is really on behalf of all Kanawanians, with a special shout out to those who shared my experience from 1990-1995.

A few things I learned along the way…

*Non Nobis Solum (Not For Ourselves Alone) My old campers, CIT’s, and staff hold me up and support me 20 years later. On September 19th, 2013 I was diagnosed with ALS. Kanawanians from all over the world sent me words of encouragement, helped me to fundraise, and showed up to events. They helped me to feel that I was never alone in my illness.

*The More You Put In, The More You Get Out (At Camp, and in Life) My first year as a junior girl counsellor I was scared to be at this place where it felt like everyone knew each other, knew the songs and the cheers, knew where everything was, it was intimidating. I jumped in with both feet and ended up in the Katimivik in front of the whole camp translating with my terrible French for the camp director. Instead of feeling embarrassed by my terrible grammar, it was something to laugh along with. There may something about camp that just isn’t your thing, perhaps you feel shy singing at a campfire, maybe you don’t think you are the best swimmer, or maybe you are afraid to try something new. I remember going on my very first canoe trip. Trip leader Steve Henle asked me if I could canoe. “Of Course!” I replied, after all, I had gone canoeing a few times over the summer on the lake with my campers, and of course we had to canoe to get to our overnights, didn’t that make me an expert? Well, as we pushed off for our 5 day trip to explore the beauty of Papineau-Labelle my canoe went all over the place and was wonky as could be. Steve good naturedly paddled up and asked about my J-Stroke. “Um, well, sort of…” Somehow I had gotten away with never properly learning one, too embarrassed to admit it, in fact, I probably had let my campers stern all summer long! Well, nothing teaches one how to canoe like being thrown into a 5 day canoe trip! I’ll never forget that trip, the laughter, picking blueberries, climbing the firetower, silliness around the campfire, and of course at the end, I had become a master canoeist. It is now extremely frustrating to not be anywhere but in the stern of a canoe! So be silly, dress up for tacky day, get hyped for all camps, sing in front of a campfire, always do what you are afraid to do!

*MMFI (Make Me Feel Important) You have no idea the effect you have on others. At some point we are all afraid of fitting in, making friends, maybe looking dumb. Whether you are a camper or staff you can make a difference to others. It can be as simple as a friendly smile, an offer to sit next to you, or a compliment. You can change someone’s life. When I was at camp one of the campers was bullied at school, she was tall for her age and somewhat socially awkward. At Camp Kanawana she was included and felt safe for the first time in her life. I promise you, when you become an adult, being different from everyone else, becomes the cool thing to be, and that is where people find success in life!

*Make Moments MatterI’ll never forget the Chief’s talk, at the time the Camp Director was Bruce Netherwood, who inspired us all. He spoke about how often we are looking around the corner to what is coming next in our lives instead of appreciating what we have right in front of us, right here, right now. I am a planner and thought, “Hey, that’s what I do!”. So stop and take a moment to smell the roses, hug your friends, and love where you are in this beautiful spot Kamp Kanawana.

*Dreams do Come True What I’ve learned from this magical place, my skills, my confidence, my creativity all leads back to Non Nobis Solum. At that same chief’s talk, our Director looked around the room and said if any of you want to be Camp Director you can. I thought “How cool would that be? I would LOVE that job!!!”. Well, a few years later, I fulfilled my dream of becoming one. Since then, I’ve travelled the world, gone back to school and achieved a Masters in Art Therapy, have given back to others by working in addiction and mental health, and continue to find meaning and purpose in my life by being an advocate in the fight against ALS. I can say I have had an amazing life.

This is what the people and spirit of Kanawana has done for me.

WHEREVER YOU GO, WHATEVER YOU DO, YOU WILL ALWAYS BE A KANAWANIAN…

West Island Blog - June 23, 2016

Carol Sharman Skinner, a tireless advocate for people living with ALS and a former Camp YMCA Kanawana staff member, is the recipient of the 2016 Camp YMCA Kanawana “Pip” Award. Ms Skinner is the ninth person to receive the award, established in 2007 to recognize the contributions of distinguished Kanawana alumni.

“In her personal and professional life, Carol has always been a leader, and now she has taken on a greater role,” says Andrew Caddell, who sponsors the award. “The purpose of this award is to recognize people who have taken the values they learned at Kanawana and applied them to the larger world. Carol Skinner receives the “Pip” Award for her determination and dedication to the fight against ALS for herself and others. The “Pip” Award Committee felt Carol’s ability to deal with this personal challenge with such courage and grace made her a very deserving recipient.”

On July 7, Carol Skinner will be presented the “Pip” award at camp before campers, including her husband Travis and friends. In September, she will receive the award at the annual Alumni and Friends weekend at Camp YMCA Kanawana. Carol Skinner was a counsellor and section director at Kanawana from 1990 to 1995. Subsequently, she worked in Cape Cod, Massachusetts, where she rose to the position of Director of YMCA Camp Hayward. She acquired a Master’s degree in Art Therapy, worked as a school counsellor for five years and then moved to Ottawa as an Art Therapist for the Canadian Mental Health Association. In 2013 she was diagnosed with Amyotrophic Lateral Sclerosis and became involved in advocacy with ALS Canada. She has spoken to the media, groups and individuals about the impact of living with ALS and the importance of raising awareness for this untreatable, terminal illness. She says “Never has “Non Nobus Solum” (Not For Ourselves Alone) meant so much to me. Kamp Kanawana staff and campers have never failed to stand by me as I live with this devastating illness.’’

About the “Pip” AwardThe “Pip” Award is given annually to a former camper, counsellor or supervisor at Camp YMCA Kanawana who best exemplifies the values of selflessness and contribution to the community. The award is a memorial to Philip “Pip” Caddell (1913‐2004), Second World War officer, Montreal executive and community volunteer, and his grandson, James Caddell (1973‐2005), UN Peacekeeper, NGO Worker and public servant. Both attended Camp YMCA Kanawana – “Pip” as a camper in 1928 and James as a camper and counsellor in the 1980s and 1990s. The “Pip” Award Committee is composed of Kanawana alumni.

Previous recipients include Richard “Itche” Kerr, a volunteer working with the physically challenged; Richard Patten, former Ontario cabinet minister; Stuart McLean, broadcaster and author; Bruce Netherwood, YMCA leader and author; John Cleghorn, former CEO of the Royal Bank; the late Sam Lazarus, NGO volunteer and the Lazarus family; Jeniene Philips Birks, former broadcaster and community volunteer; and Terry “Aislin” Mosher, editorial cartoonist and supporter of the disadvantaged. ​About Camp YMCA KanawanaCamp YMCA Kanawana has been contributing to the well‐being and success of youth ages 7 to 20 for over 120 years. Children take part in a safe and unique outdoor experience while learning about the environment and sustainable development. A study by the American Camp Association has shown that the camp experience has a positive long‐term impact on the quality of life and life skills of youth such as self‐esteem, leadership, environmental awareness, and the ability to develop lasting friendships. Established in 1894, Camp YMCA Kanawana was the first summer residential camp in Québec. It is accredited by the Association des camps du Québec and is a founding member of the Association. For more information, see www.ymcakanawana.com or our Facebook or Twitter pages.

Seize the 30 Days - ALS Canada Awareness Campaign - June 24, 2016

DIAGNOSED IN 2013 CAROL SEIZES EVERY DAY AND SHARES IT ON HER INSPIRATIONAL BLOG

On September 19, 2013, Carol Skinner was diagnosed with ALS. Together with her husband, Travis, she created a website designed to, as she states it, “stay in touch with friends and family, to update everyone on my status, and to include loved ones in our journey”.

The message on her site is both focused and inspirational. She describes the deep love and affection her and her husband share, she showcases the exhuberance they feel when traveling the world, and she writes engagingly about her life and the importance of seizing the day. The photo gallery on the site is a wonderful illustration of her life experiences.​Carol has received honours and plenty of media coverage for the important work she does in support of ALS Awareness. Check out her blog and seize a few moments to hear her story.

Ottawa Citizen - June 20, 2016

Egan: One has ALS, the other destined to, but hope a shared defenceKelly Egan, Ottawa Citizen

June is ALS month, 30 days to take a second to consider their every waking hour.I ask Carol Skinner, 44, about this. She was diagnosed with so-called Lou Gehrig’s Disease on Sept. 19, 2013 and now uses a wheelchair to leave her Kanata apartment and has noticed her voice beginning to slur a little, ALS’s inevitable “progression.”

Are there moments, or even hours, when she is watching a sunset, maybe, or absorbed in a movie, or in her husband’s arms, when she does not think about the terminal illness?

“Never.”

She maintains a blog (livelovelaughwithcarol.com) where she asks an arresting question of anyone drowning in the mostly inconsequential of daily routine: What Would You Do? (with three to five years left.)

And she passes along a remarkable story about the here-and-now. The youngest of three children, she was at a family gathering in Montebello in March when the warmth of the reunion was interrupted by terrible news.

Her older brother, Don, only 53, was on a boat with friends in the Caribbean when he dropped dead of a heart attack. He had travelled to Ottawa in 2014 to support Carol during the annual ALS Walk. Wasn’t she the one, after all, with the emptying hour-glass?

“It was quite devastating,” she said one day last week. “A reminder of how fleeting life is.”

So she is doing what she can, squeezing in all the travel and advocacy her condition will permit, in a city that is witness to the rapid demise of Mauril Bélanger, the Ottawa-Vanier MP bravely working in the House of Commons in the throes of the illness.

“It’s really tough,” she said, to see Bélanger so soon voiceless and in a wheelchair. “I’m terrified of what’s happening to me, to be completely honest.”

So live, urgently. What else is there, really? Carol is travelling to the Saint Sauveur, Que., area in July to receive an award for her advocacy for ALS, for which there is no cure or effective treatment. And in August, she is due to take a Scandinavian cruise with family, including husband Travis, with a stop in London.

“My progression, compared to others, is good.”

•

There are those living with ALS and the rarity that is Karen Lawrence, who wakes with ALS on the horizon.

In January 2014, she underwent genetic testing to determine if she was a carrier of the mutation that had claimed some 14 members of her extended family, over three generations, including her father. She was.

A nurse and clinical manager at The Ottawa Hospital, a wife, mother of three children, she just had to know, tired of “walking around with a target on my back.”​She is so far free of the disease and in good health. But it’s coming, she said. So, how to cope? Run, it turns out, as fast as you can.

Karen Lawrence is part of a family that has lost 14 members to the ALS, including her father, Wayne Hovey, who died at age 60. PAT MCGRATH / .

Lawrence, 39, runs five times a week, piling up between 40 and 80 kilometres, depending on training schedules. She completed her first marathon in Copenhagen in May and plans to run the New York City classic in November. Each is a fundraising opportunity, at which she excels.

There have been two ALS golf tournaments, so far raising about $40,000. This year’s effort, in August, should raise another $60,000. When she runs in New York, she hopes to generate at least $10,000. In 2014, her team raised $14,000 at the annual ALS walk.

“Overall, it has completely changed my whole perspective on life.”

Running, she says, is a way to literally and psychologically put one foot in front of the other.

“My head is very busy all the time,” she said, catching up on a story first brought to Citizen readers in June 2014. “Running is like cleaning house.”

Her hope is with research. She is taking part in a clinical trial with a Miami team that is studying so-called familial ALS, which strikes about 10 per cent of sufferers.

And she is passionate about raising funds for the already-named Neuromuscular Clinical Research Centre, which The Ottawa Hospital hopes to open on the Civic campus in 2017.

(A priority will be research into ALS, or amyotrophic lateral sclerosis, a disease that attacks the nerve cells and leaves muscles paralyzed.)

Lawrence is one of the most positive people you’ll ever meet, though she works in an oncology unit.

“We’ve got it great,” she says she likes to tell her staff, “we’re going home at the end of the day.”​So we are. June is ALS month — pass the hours, or spend them — in time, the ledger precious.

Camp YMCA Kanawana Pip Award - June 15, 2016

Saint-Sauveur (Québec), June 15, 2016 – Carol Sharman Skinner, a tireless advocate for people living with ALS and a former Camp YMCA Kanawana staff member, is the recipient of the 2016 Camp YMCA Kanawana “Pip” Award. Ms Skinner is the ninth person to receive the award, established in 2007 to recognize the contributions of distinguished Kanawana alumni.

“In her personal and professional life, Carol has always been a leader, and now she has taken on a greater role,” says Andrew Caddell, who sponsors the award. “The purpose of this award is to recognize people who have taken the values they learned at Kanawana and applied them to the larger world. Carol Skinner receives the “Pip” Award for her determination and dedication to the fight against ALS for herself and others. The “Pip” Award Committee felt Carol’s ability to deal with this personal challenge with such courage and grace made her a very deserving recipient.”

On July 7, Carol Skinner will be presented the “Pip” award at camp before campers, including her husband Travis and friends. In September, she will receive the award at the annual Alumni and Friends weekend at Camp YMCA Kanawana. Carol Skinner was a counsellor and section director at Kanawana from 1990 to 1995. Subsequently, she worked in Cape Cod, Massachusetts, where she rose to the position of Director of YMCA Camp Hayward. She acquired a Master’s degree in Art Therapy, worked as a school counsellor for five years and then moved to Ottawa as an Art Therapist for the Canadian Mental Health Association. In 2013 she was diagnosed with Amyotrophic Lateral Sclerosis and became involved in advocacy with ALS Canada. She has spoken to the media, groups and individuals about the impact of living with ALS and the importance of raising awareness for this untreatable, terminal illness. She says “Never has “Non Nobus Solum” (Not For Ourselves Alone) meant so much to me. Kamp Kanawana staff and campers have never failed to stand by me as I live with this devastating illness.’’

About the “Pip” AwardThe “Pip” Award is given annually to a former camper, counsellor or supervisor at Camp YMCA Kanawana who best exemplifies the values of selflessness and contribution to the community. The award is a memorial to Philip “Pip” Caddell (1913‐2004), Second World War officer, Montreal executive and community volunteer, and his grandson, James Caddell (1973‐2005), UN Peacekeeper, NGO Worker and public servant. Both attended Camp YMCA Kanawana – “Pip” as a camper in 1928 and James as a camper and counsellor in the 1980s and 1990s. The “Pip” Award Committee is composed of Kanawana alumni.

Previous recipients include Richard “Itche” Kerr, a volunteer working with the physically challenged; Richard Patten, former Ontario cabinet minister; Stuart McLean, broadcaster and author; Bruce Netherwood, YMCA leader and author; John Cleghorn, former CEO of the Royal Bank; the lateSam Lazarus, NGO volunteer and the Lazarus family; Jeniene Philips Birks, former broadcaster and community volunteer; and Terry “Aislin” Mosher, editorial cartoonist and supporter of the disadvantaged.

About Camp YMCA KanawanaCamp YMCA Kanawana has been contributing to the well‐being and success of youth ages 7 to 20 for over 120 years. Children take part in a safe and unique outdoor experience while learning about the environment and sustainable development. A study by the American Camp Association has shown that the camp experience has a positive long‐term impact on the quality of life and life skills of youth such as self‐esteem, leadership, environmental awareness, and the ability to develop lasting friendships. Established in 1894, Camp YMCA Kanawana was the first summer residential camp in Québec. It is accredited by the Association des camps du Québec and is a founding member of the Association. For more information, see www.ymcakanawana.com or our Facebook or Twitterpages.

About the YMCAs of Québec The YMCAs of Québec is a charitable organization that builds stronger communities by providing opportunities for everyone to lead fulfilling, active, healthy and engaged lives. Its 10 YMCA centres, International Language School, Residence, Camp YMCA Kanawana and its 40 service sites across the province are visited each year by more than 120,000 people. The first YMCA in North America was founded in Montréal in November 1851.The YMCAs of Québec is part of the Canadian network of 48 YMCA associations. For more information, visit ymcaquebec.org or our Facebook andTwitterpages.​

12th Annual ALS Canada Research Forum - Toronto - April 30, 2016

My Speech:*INTRODUCTION My name is Carol Skinner and this is my loving husband Travis, it is an honour to be with you today. I was diagnosed with ALS on September 19th, 2013, at the age of 41. *HISTORY The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. It is an unwanted anniversary that starts us on a ticking clock, counting down the days we have left. At the time, I had been working as an art therapist, facilitating groups for individuals with mental health and substance use disorders at the Canadian Mental Health Association. I began experiencing symptoms earlier that year. In fact, I took my South African husband ice skating on the Rideau Canal in February, and instead of skating circles around him as I used to, my legs could not hold me up. I shrugged it off to a long winter of not doing enough exercise. That April, I went to Travis’s brother’s wedding in Namibia. I fell, tripping over my own feet on at least 5 separate occasions during the trip, twice during the wedding reception, I’m sure guests thought I had a few too many! That July I went for a physical and my doctor asked me to stand on my heels, simple right? I couldn’t do it, and my brain was confused, it was telling my feet what to do, but they just wouldn’t listen! Until my brain came to the conclusion that standing on your heels must be impossible for everyone! When the neurologist diagnosed me, Travis and I did exactly what he told us not to, we went home and Googled ALS. The end result, was that we felt completely alone. Realizing that I have a terminal disease, that no one understands, with no treatment, no cure, and absolutely no hope. *IMPACT Immediately I had to give up my career that I was proud of because I lacked the strength in my muscles and experienced extreme fatigue. We had to sell our home as it was a two floor walk-up and I could no longer climb stairs. I remember the exact moment I got stuck on the sidewalk, knowing that if I were to take another step, my legs would collapse. That was also the day I had to come to terms with the fact that I could no longer drive. After simple tasks, such as taking a shower and brushing my teeth, I need to rest. Any activity, even having coffee with a friend, feels like a full day of work. ALS, being a degenerative disease is terrifying to live with. Its progression takes away ability and autonomy. Day by day I discover activities I can no longer accomplish on my own. As a strong independent woman with a Type A personality, this is extremely frustrating. Looking to the future is devastating, knowing what is yet to come.*ADVOCACY I am very conscious of time and do not take it for granted. Due to the atrocious timeline for those of us living with ALS, there is a sense of urgency in the necessity of discovering viable treatment options. I know how lucky I am, how others are further along in losing their battle with ALS. I am here to provide a voice for those who can’t be, for those who are struggling and suffering and are in desperate need of your help. ALS is not only taking away my motor function, it has stolen my future, and also my dreams. At one point, I thought it had stolen the essence of who I am as I struggled to find meaning, purpose and a reason to live. Advocating on behalf of those living with ALS has brought meaning back into my life. I am grateful to be provided with this opportunity to keep the momentum of advocacy for ALS alive. To plea with our community to continue to raise awareness and much needed fundraising for research to find a treatment and cure. *TRAVIS The ice bucket challenge bought such needed awareness to ALS. Finally people around the world were talking about this unknown, understated and extremely underfunded disease. Hope, as carol has touched on, finally started to arrive for those people who's life has been so drastically devastated by this illness. Nothing can be done about ALS without funding. I remember watching the news everyday as the figures continued to rise from donations during the 2014 ice bucket challenge. To everyone that took part we are eternally grateful. At last ALS Canada and ALS foundations around the world started getting the much needed resources to make a differences and ensure that research is front and foremost. But it just can't stop there. We don't have a cure yet. ALS has received more attention in the last 2 years than it ever has, but there is still no concrete answers to this disease. Advocacy and funding has to continue, in order for research to continue. The ice bucket challenge has been great, and we encourage people to get together each year and continue its legacy every August until a cure. We also need to come up with new ideas. Everyone can raise funding and build on awareness no matter how big or how small. Carols father for example has put together fundraising events in his local community. Using his contacts and friends he has put together fun and engaging evenings at local restaurants were people have not only been informed and educated about ALS but also had a great meal and a fun evening. As he advertised and the word spread radio stations got involved and an article ended up in the local newspaper. Their may have only been a hundred or so people at the event but it's a group of people who's lives have been changed forever and they now too wont to make a difference in the fight against ALS. Every bit counts in insuring that hope stays alive and we can look to the future and tell people that ALS is a thing of the past. *HOPE The word “Hope” is often an overused term, sometimes even offered up as a cliché. But for those of us living with ALS, Hope is what can make the difference between life or death. ALS takes hope away. You are those who can give it back to us. Because of your support, as an individual living with ALS, I no longer feel alone. I now have hope where I once had none. Thanks to continued investment in ALS research, I believe that making ALS history will be an inevitable accomplishment and a day we can all be proud to celebrate.

“When the World says Give Up, Hope Whispers, Try it One More Time" -Anonymous

ALS Ambassador - February 2016

Carol Skinner – Ottawa RegionCarol Skinner is 43 years old and lives in Kanata with her husband Travis. Her first symptoms began to appear in February of 2013, when she had difficulty skating on the Rideau Canal. At first, Carol, who had always been the one to “push Travis around on the Canal,” thought she needed to get fit again after a long winter so she began to exercise. She tried walking and running to get fit but began to trip and fall. After a series of events where Carol continued to lose her balance, she sought the advice of a doctor, who referred her to a neurologist. It was then that she and Travis were given the devastating news. On September 19, 2013, at the age of 41, Carol was diagnosed with ALS.

Carol is truly a loved woman. With her husband by her side, she is surrounded by friends who help them in any way they can. Her blog (www.livelovelaughwithcarol.com) provides her with a venue to keep friends and family up to date with her life and the ongoing progression of the disease.

Still a vibrant, outgoing woman, Carol, in partnership with ALS Canada has advocated on Parliament Hill for the ALS community and spoken many times to media about her story to raise awareness for the cause. Her motto is, “You have to live for the now and appreciate what you have – make it count.”

Anyone who follows the news closely might notice that certain topics never fail to make headlines.Mayhem. Death. Tragedy. Corruption. Scandal.If there is one overarching truth in the news business, it’s that humanity, at its very worst, cannot be ignored.And if that is true, so is this: Humanity, at its very best, sometimes does get ignored.While heroes and victors, especially on the largest of stages, do receive their fair share of headlines, we often neglect to tell the stories of the heroes and victors in our own communities. They are the invisible ones, whose deeds go unnoticed by everyone but the people they directly affect.Yet, on occasion, these characters and their stories do become news. And as we leave work on Dec. 24 to spend time with family and loved ones this Christmas, it’s these stories that we want to take with us and share with you.Because isn’t Christmas — when you drill down to its core — a holiday built around humans at their best? It’s a time for friends, family and neighbours, of all stripes and colours, to welcome each other with love, respect and compassion.Here are some of the stories and characters in Ottawa that made us want to be better.

We want to remind you of Carol Skinner, who was diagnosed with ALS in 2013, and who shared her story with the Citizen this year about living life on a deadline. She reminded us that courage is sometimes nothing more than a refusal to give up.

We want to remind you of Sarah Stott. A year after a train accident left her without her right leg, half of her left, and stumps where her fingers once were, she’s worked her way through rehab in pursuit of the activities so many of us take for granted. This Christmas she was able to wrap gifts for friends, a task that a year ago would have seemed impossible.

We want to remind you of the story of Joe Oombash, a 69-year-old blind and mentally disabled man, with an incredible musical talent, who longed to be near his family on Cat Lake First Nation, an Ojibwa reserve in northern Ontario. Joe was taken into state care at age 13 and rarely saw his family — many of his siblings were sent to residential schools. Despite slim odds, Joe kept up hope for a return, and even took it upon himself to try to learn Ojibwa by listening to CDs. A few months after our story came out, the wheels of bureaucracy began rolling, and Joe found out the government was bringing him home, 56 years later.

We want to remind you of Jack and Dorothy Urie’s love story, which began 68 years ago and ended in February with their deaths, just three days apart. Both in their 90s when they died, their story, as told by their children, was one of a shared life and a shared love, remarkable in its making and remarkable in the timing of its end.

And we want to remind you about Pizza Dad, an Ottawa man whose story led to people around the world rallying together to help him and his family this holiday season, even though help was never asked for.

There are more stories like these that we don’t have space for here, and even more stories yet to be told. During the holidays, it’s good to be reminded of this. Love, compassion and courage are all around us, even if we don’t always see it.​Merry Christmas and Happy Holidays,From the Ottawa Citizen

An Amazing Evening ALS Society Thank You Letter - December 2016

West Island Blog - November 25, 2015

$15 million invested in ALS research- Carol Skinner speaks out to the West Island By Rhonda Massad

Meeting Carol was a like meeting a shinning star. Here she is with her dad, Peter Sharman and organizer Amanda Lavigne

​Thanks to a $15 million investment in Amyotrophic lateral sclerosis (ALS) the vision of making ALS treatable gives former West Islander and spokes advocate for ALS, Carol Skinner hope as she battles the deadly disease.

On the anniversary of the announcement of the 2014 ALS Ice Bucket Challenge results and partnership between ALS Canada and Brain Canada, the ALS Societies across Canada and the ALS Canada Research Program in partnership with Brain Canada, announced, last Thursday, the final recipients of the 2015 grant competitions. In one year, $15 million has been invested in the exciting ALS (amyotrophic lateral sclerosis) research in Canada, representing a ten-fold increase over historical annual commitments.

“Because of this support, I have hope where I once had none,” Carol said on the day of the announcement. “Every Canadian that has supported, donated, advocated and participated in fundraisers for ALS has made today possible.”

After the announcement last week Carol spoke to supporters at a fundraising celebration at Table 09 in Pointe Claire. “I am very proud to be in Montreal today,” she said to a silent crowd, “to be a part of this historic announcement for ALS research. This is where I grew up, worked at summer camp, met my best friends and discovered my hopes and dreams.”

The diagnosis in September of 2013, at the age of 41. Carol was given 2 to 5 years to live. According to Carol the average survival rate with amongst those living with ALS is 3 years.

“It is a day that I will never forget. An unwanted marker imprinted in my life.”

“ALS, being a degenerative disease is terrifying to live with. Its progression takes away ability and autonomy. Day by day I discover activities I can no longer accomplish on my own. My struggle is not unique, this is a shared struggle. The history of the disease is over 140 years since definition and is dramatically underfunded.”

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.​Carol shares her wisdom and experiences about living with ALS on her blog http://www.livelovelaughwithcarol.com .

CTV News - November 19, 2015

The success of the ice bucket challenge has led to a huge increase in the money that's available for research into ALS. ALS (also known as Lou Gehrig's Disease) is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed.

More than 200,000 Canadians took part in the challenge to raise awareness and funds to fight the disease last year. And while the stunt was hailed by some and ridiculed by others, it raised $17 million in Canada alone.

Thursday, the ALS Society of Canada announced that money would go directly to research; $15 million will go to fund 34 research projects across Canada, including here at the Montreal Neurological Institute.

Normally the group is only able to spend about 1.5 million a year, on average, on research, meaning that the ice bucket challenge has provided enough money to increase their grants tenfold.​Carol Skinner has ALS and advocates on behalf of others dealing with the disease. She says the announcement makes her optimistic.“Everybody said, you know, you're terminal. That's it. There's no treatment but within this short period of time, two years I’ve had ALS, now there's hope, there's real historic research that now has the potential to find treatments and not only treatment but I’m hopeful for a cure,” she said.​Organizers admit it's going to be hard to raise $17 million every year, so the society is looking for other ways to keep donations coming.

ALS Research Investment Press Conference - November 19, 2015

The ALS Ice Bucket Challenge: One Year LaterALS Societies Across Canada Announce $15 Million Investment in ALS ResearchSingle, Largest Investment in ALS Research Awarded in Canadian HistoryNovember 19, 2015Montreal Neurological Institute and Hospital

​About ALS Canada Research Program

The ALS Canada Research Program aims to accelerate research impact through a comprehensive national program focused on translating scientific discoveries into treatments for ALS and fostering Canada's strong and networked ALS research community to build capacity and collaboration. Support for the ALS Canada Research Program is made possible by the generosity of donors, the ALS Societies across Canada, Brain Canada and the federal government's Canada Brain Research Fund.

On the anniversary of the announcement of the 2014 ALS Ice Bucket Challenge results and partnership between ALS Canada and Brain Canada, the ALS Societies across Canada and the ALS Canada Research Program in partnership with Brain Canada, are pleased to announce the final recipients of the 2015 grant competitions. In one year, $15 million has been invested in the exciting ALS (amyotrophic lateral sclerosis) research in Canada, representing a ten-fold increase over historical annual commitments.

"We are committed to funding the most promising research through the ALS Canada Research Program, to make ALS a treatable disease," said Tammy Moore, CEO of the ALS Society of Canada. "Never before have we had the financial resources to be able to fund multi-collaborative research projects across leading academic institutions to the extent we can today, it is because of the generosity of Canadians who embraced the ALS Ice Bucket Challenge and the investment from the federal government's Canada Brain Research Fund through Brain Canada. This important research brings hope to the 3000 Canadians living with ALS today, and the people who will be diagnosed in the future."

"Brain Canada is proud to partner with the ALS Societies of Canada on their research program," said Inez Jabalpurwala President and CEO, Brain Canada Foundation. "Through this partnership, we have been able to attract researchers from different disciplines and institutions whose expertise covers a range of neurodegenerative diseases. This will accelerate our understanding of ALS, and bring us closer to improved diagnosis, treatment, prevention and ultimately a cure for this devastating disease."

A total of nine competitive calls were put out for grants ranging from $75,000 to $2.9 million, the portfolio of projects were selected through a highly competitive process, reviewed by national and international panels of ALS research experts, with the applications judged for work that would significantly move the field of ALS research forward. In total the 34 projects being funded through the announcements in one year represent 56 investigators at 15 universities in seven provinces. Of the $15 million invested in the past year, the largest allocation is the 2015 $10.15 million Arthur J. Hudson Translational Team Grants (Hudson Grant), awarded to five teams of researchers spanning academic institutions across Canada:

* Investigation into the potential therapeutic benefits preventing the inflammation in the body that causes motor neurons to die - $2.48 million[Principal investigator: Dr. Jean-Pierre Julien, Université Laval]* Exploration of new high-powered MRI techniques that may be able to diagnose ALS earlier, monitor disease progression and determine treatments' efficacy - $2.94 million[Principal investigator: Dr. Sanjay Kalra, University of Alberta]* Understanding the impact of toxic proteins on motor neurons - $1.44 million[Principal investigator: Dr. Peter St George-Hyslop, University of Toronto]* Research into the removal of a toxic protein through a simple injection into the bloodstream rather than an injection into spinal fluid - $1.60 million[Principal investigator: Dr. Jiming Kong, University of Manitoba]* Research on how stress granules form abnormally in ALS patients that impact their motor neurons and understanding how this may help to slow disease progression - $1.69 million[Principal investigator: Dr. Christine Vande Velde, Université de Montreal]Learn more about all research projects funded as part of the $15 million investment at http://als.ca/en/news/awareness/als-canada-research-program-announcements"Through funding from the ALS Canada Research Program and Brain Canada partnership, our research community can work together and tackle many different aspects of ALS to accelerate the discovery of treatments for ALS patients," said Dr. Christine Vande Velde, Scientist, University of Montreal Hospital Research Centre (CRCHUM) and associate professor, University of Montréal. "ALS research has come a long way in the past decade, and these research investments can only help further explore answers to this complex disease."

While this year's landmark investment in research is a critical step forward, it's recognized that ongoing investments are essential to make ALS a treatable, not terminal disease. "We are pleased to be able to make these historical investments today, but it is critical to continue to raise significant funds in 2016 to support the ALS Canada Research Program so we can build on the momentum of discoveries we expect from these projects," states Tammy Moore. "Canada is positioned as a leader in ALS research, consistently in the top five countries for ALS discoveries and the ALS Canada Research Program has been a critical contributor to that success."

"Being given a diagnosis of ALS was devastating to myself and my family," said Carol Skinner, an advocate who was diagnosed with ALS in 2013 at the age of 41. "I felt frightened and alone. But seeing the tidal wave of support from our community through the Ice Bucket Challenge, and the potential of significant discoveries from the outcomes of the research projects announced today, inspires me to have faith that ALS will become a treatable, instead of terminal illness."

Along with the funds allocated to research, an additional $4.4 million raised by the 2014 Ice Bucket Challenge was invested to support the day-to-day care of Canadians living with ALS. Approximately 2,500 to 3,000 Canadians are living with ALS today, and the average cost for caring for one person with ALS is between $150,000 and $250,000.

For more information regarding the investments for ALS research or to donate, please visit www.als.ca.

About ALS Canada Research ProgramThe ALS Canada Research Program aims to accelerate research impact through a comprehensive national program focused on translating scientific discoveries into treatments for ALS and fostering Canada's strong and networked ALS research community to build capacity and collaboration. Support for the ALS Canada Research Program is made possible by the generosity of donors, the ALS Societies across Canada, Brain Canada and the federal government's Canada Brain Research Fund.

My Speech:​Bonjour, Good Morning,My name is Carol Skinner and I was diagnosed with ALS on September 19th, 2013, at the age of 41. Exactly 2 years and one month ago today. The average survival rate for people living with ALS is 3 years. I am very conscious of time and do not take it for granted. Due to the incredulous timeline for those of us living with ALS, there is a sense of urgency in the necessity of discovering viable treatments options.I am very proud to be in Montreal today, to be a part of this historic announcement for ALS research. This is where I grew up, worked at summer camp, met my best friends, discovered my hopes and dreams, and graduated from McGill University, class of ’95. I never imagined that 20 years later I would be diagnosed with a devastating terminal illness.The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. An unwanted marker imprinted on our lives.I was working as an art therapist, facilitating groups for individuals with mental health and substance use disorders at the Canadian Mental Health Association. I had to give up my career that I was proud of because I lacked the strength in my muscles and experienced extreme fatigue. My husband Travis & I had to sell our home as it was a two floor walk up and I could no longer climb stairs. ALS, being a degenerative disease is terrifying to live with. Its progression takes away ability and autonomy. Day by day I discover activities I can no longer accomplish on my own. As a strong independent woman with (some might say) control issues, this is extremely frustrating!My story is not unique. This is a shared struggle. The history of this disease is over 140 years since definition.In 1874, Jean-Martin Charcot began using the term amyotrophic lateral sclerosis. It has been over 75 years that Lou Gehrig brought public awareness about ALS to the world with his “Luckiest Man on Earth” speech. It is unbelievable that in all the decades since that time, not only has no cure been found, but there is no treatment for this debilitating disease.One of the major reasons for this is that ALS is terribly underfunded.Today’s announcement proves that when a nation comes together, such as an event like the Ice Bucket Challenge, we can make a difference. Not only did the Ice Bucket Challenge increase worldwide understanding of ALS and its impact on the community, it raised millions of dollars. Together, with the Brain Canada partnership the funding of this important research represents the most promising potential for developing effective treatments against ALS.We need your help to keep going and continue the momentum. The Ice Bucket Challenge will occur every August Until A Cure, the Walks for ALS will continue annually, and fundraising events such as the one my father and his friend Amanda are hosting tonight at restaurant Table 09, continue to have significant influence in making ALS a treatable, not terminal disease.Because of this support, as an individual living with ALS, I no longer feel alone. I now have hope where I once had none. This is because of you. Every Canadian that has supported, donated, advocated and participated in fundraisers has made today possible and has proven that every single person has the ability to affect change. Thanks to this investment and continued investment in ALS research, I believe that making ALS history will be an inevitable accomplishment and a day we can all be proud to celebrate. Merci Beaucoup.

The Suburban - November 12, 2015

Help support ALS Canada at Table 9

Nov 12, 2015

​WHAT IS ALS (amyotrophic lateral sclerosis)?ALS is a neurodegenerative disease where the nerve cells that control your muscles die. The 'living wires' which connect your brain to your muscles degenerate, leading to a loss of mobility, loss of speech and eventually impact the ability to breathe.

This is a terminal disease. ALS does not have a cure nor an effective treatment. In Canada, approx. 2500-3000 people are living with ALS; 1000 will succumb to the disease and 1000 will be newly diagnosed each year. The lifespan after diagnosis is on average two to five years.

Judy Starritt used to be quite the talker. In the summer of 2013, however, she noticed her tongue began to swell and her speech would slur. Several doctors’ appointments and an MRI later, they figured out what was wrong. In March 2014, Starritt was told she has amyotrophic lateral sclerosis, commonly known as ALS, a neuromuscular disease in which nerve cells die, paralyzing muscle movements like walking and talking. Today, her voice barely registers as a whisper.

When walking through the airport, however, she’ll quickly chat with strangers about last summer’s ice bucket challenge and ask if they know someone who has ALS. If they say they don’t, she’ll respond, “you do now!” And then she’ll thank them.

Those living with ALS have already seen tangible benefits with the money stemming from last year’s viral craze. Starritt sleeps with a bilevel positive airway pressure machine, also known as a BiPAP, to help with her breathing and give her diaphragm a little rest. During the day, a Cough Assist helps keep secretions, like mucus, clear from her lungs. Each machine costs about $5,000, and Starritt is thankful these two items won’t have to come out of her own pocketbook. She borrowed both indefinitely from the ALS Society of Nova Scotia and New Brunswick, which recently added five BiPAP and five Cough Assist machines with ice bucket funds. “You just sign a piece of paper and it’s yours for as long as you need it,” Starritt says.

A year later, ALS Canada doesn’t want to let all the awareness simply dry up and disappear. On August 6th, groups across Canada will celebrate the one-year anniversary of the ice bucket challenge by asking people to dump cold water on their heads once again, and maybe think about donating once again.ALS is extremely expensive for the roughly 3,000 Canadians living with the disease. Homes and vehicles need to be retrofitted to make them wheelchair accessible. Special speakers are purchased to help amplify ones voice. Personal care workers are often brought aboard. The average cost to a Canadian family with a member diagnosed with ALS can be $150,000 to $250,000, according to ALS Canada. And for the 1,000 Canadian diagnosed annually, there is no cure or treatment.

“I walked in for a medical appointment and I walked out with two to three years to live,” says Carol Skinner, who was diagnosed with ALS in September 2013 at the age of 41. She and her husband moved out of their Ottawa condo and into another apartment that was more accessible for her deteriorating condition. She stopped working as an art therapist with the Canadian Mental Health Association. She used to love skating the Rideau Canal; soon she could barely walk around the block. It was lonely feeling. But in the summer of 2014 when the Ice Bucket Challenge started to take off, her mindset changed. “All of a sudden, I felt the world had my back,” she says. From her local ALS support worker, Skinner is currently borrowing a wheelchair and a shower pole, which allows her to still get in and out of the shower independently. More importantly, she felt like people cared.When the Ice Bucket Challenge craze started to wind down in Canada last year, members from various ALS groups across the country had to figure out what to do with a $17 million windfall of money. “When people dumped water on their head, were they thinking 100 per cent of the money should go to research or were they saying it should go for wheelchairs and equipment?” asks Lorne Zinman, a neurologist and director of the ALS Clinic at Sunnybrook hospital in Toronto.

The answer, they reasoned, is a mix of the two. Each province pooled together a total of $10 million for research, an amount that was matched dollar for dollar by the not-for-profit neuroscience research organization Brain Canada. The remaining $7 million was split amongst ALS groups from each province, depending on where the donations came in from, for individual care.

In New Brunswick and Nova Scotia alone, the ice bucket challenge raised $775,000, says Kimberly Carter, President and CEO of the ALS Society of New Brunswick and Nova Scotia. The group contributed $415,000 to ALS Canada’s research initiative, while the remaining money is for investments in their equipment loan program. The recent additions of five BiPAP and five Cough Assist machines aren’t just sitting around the office either. “They were gone when we got them,” Carter says. “We had a waiting list.”

Her group also purchased two high-end power wheelchairs that can be controlled by head movements, ideal for when someone is no longer able to use hands or legs to manoeuvre. In total, they’ve spent $100,000 on new equipment thus far while the remaining funds are put aside to ensure the equipment loan program can keep going for years to come, as well as hire care workers. In a first for New Brunswick, Carter hired a full-time client services manager, who checks in with clients on a weekly or monthly basis to customize a care program and help them adapt throughout all the stages of their ALS.Back in the lab, as much as $10 million of ALS Canada’s $20 million dedicated for research will be made available this year via various grants. “It takes time and the money has to be distributed fairly in a peer-reviewed fashion,” Zinman says. “We’re not going to see changes overnight, but boy will things be forwarded fast with this windfall.” After all, never before has ALS Canada offered more than $2 million in grant money in a single year.

Zinman explains the huge influx of cash has brought forward ideas that researchers previously balked at even attempting—like stem cell transplantation— because they figured trials would be far too expensive for approval. But with the ice bucket challenge money, anything feels possible. ALS Canada has already approved a $500,000 clinical trial for pimozide, in hopes that the anti-psychotic drug proves that it strengthens where motor neurons connect the brain to muscles, thereby allowing muscles to function longer.

“In order to cure a disease, you don’t have to understand 100 per cent of it,” Zinman adds. “You have to understand a certain threshold about why the disease occurs and how it progresses. [With ALS], we’re not at that threshold yet.” But with a few more buckets of ice, maybe they will get there faster.

A big hockey fan, Skinner, 43, watched as a bucket of ice water was poured over Pittsburgh Penguins’ captain Sydney Crosby. Soon, everyone including Kermit the Frog was doing it, and, more importantly, talking about Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.

Diagnosed with the progressive, degenerative disease in the fall of 2013. Skinner was given just two to five years to live. As one of just 3,000 people living with it in Canada, she felt like she was on her own — until she saw thousands cheering for her survival online.

Largely credited to two young Americans, Pete Frates and Pat Quinn, the ice-bucket challenge quickly became the meme of 2014, helping to raise more than a hundred million dollars worldwide for ALS.

About 260,000 people donated to ALS Canada in just a few short months, earning a whopping $17 million over and above the $14 million the organization raised through its usual fundraising efforts.

Tammy Moore, the group’s CEO, said after Crosby posted his video, she and her staff snapped to and created a way for Canadians to direct their donations to ALS Canada.

“It wasn’t something that was planned by any of our organizations, but we were the very grateful recipients,” she said.Although its incidence rate, or the number of people diagnosed each year, is similar to that for multiple sclerosis, its high mortality means that the disease is one of the rarest, she says.

It is also incredibly expensive. Moore estimates the cost of living with ALS to be between $150,000 and $250,000, including the cost of physical aids, lost income and emotional support.

The $17 million raised by ALS Canada will be split between helping people living with the disease and funding research.

About $7 million will go for support, while $10 million will go to research, in the hopes of finding a cure or treatment. Brain Canada, a government-funded brain research foundation, has matched these donations, bringing the total money available for research to about $20 million.

Now, the organization must decide how to spend its riches, which comes with its own challenges. Should ALS Canada spend it all now, or spread it out over the next few years?

Moore said they chose to do a bit of both, earmarking $10 million to be distributed in 2015, funding creative projects that are working towards a treatment.

The rest will be distributed over the next couple years.

“We need to be able to continue to fund the research for the future, to ensure that we’re able to make progress that we want to,” Moore said. “So that when someone is diagnosed, it won’t be a terminable diagnosis; it will be treatable.”

Dr. Michael Strong, the dean of the Schulich School of Medicine and Dentistry at Western University, has been a pioneer in the field of ALS research for more than two decades. Although he no longer sits on the board of ALS Canada, he did for about 10 years.

ALS is an incredibly difficult disease to understand, Strong said, because, by the time people are diagnosed, the disease is already very advanced.

“Imagine you’re coming across a train wreck and somebody asks you to explain how it happened. You’re there at the end; that’s the problem,” he said.

But because of the small number of people living with the illness, it can be a challenge to find funding, Strong said. Most of the money being distributed by ALS Canada will go to what are known as “bridge” grants, which invest in new ideas that might not be ready for some of the larger national health grants.

“Those are hard grants to get,” he said. Often researchers find their budgets trimmed by up to 30 per cent, which makes their initial proposal all but undoable.

Moore is quick to note that if Canadians want to see this kind of exploratory research continue, they will need far more than just $17 million.

“The reality is that really is a drop in the bucket for what’s required,” she said. Moore doesn’t expect lightning to strike twice, and knows that the funds raised by 2014 ice bucket challenge are unlikely to be matched in later years. Still, she hopes people who gave once will give again.

Skinner said she and other advocates hope to bring the challenge back this August, and every August, until there’s a cure.

But in addition to the money, everybody agrees that one of the biggest gifts the ice-bucket challenge was an increased awareness of the disease, which, for so long, had flown below the radar.

When Strong first started treating the disease in the 90s, there was little knowledge of it, Moore.

“I would spend a lot of my time just explaining to families what it was,” he said.

But since the ice-bucket challenge, people have come to him with knowledge of their own. Moore said this increased awareness helped ALS Canada successfully lobby for a longer leave for compassionate care, and for helping people living with the disease feel less isolated.

“It was an illness without hope, and now I have hope,” Skinner said. “I feel blessed.”

- Robin Levinson King

Ottawa Citizen - June 14, 2015

Well over 1,000 marchers in stylish purple shirts took to the Parkway and other arteries in Ottawa Saturday to raise funds for Amyotrophic Lateral Sclerosis (ALS), more familiarly known as Lou Gehrig’s disease.ALS sufferer Carol Skinner, whose struggle with the incurable disease was documented by columnist Kelly Egan earlier this month, was at the head of the parade as it left the Canadian War Museum in LeBreton Flats, sent off by an pipe and drum band.The purple wave wound its way through the city’s west end.ALS organizations had set a target of $210,000 for donations and, early in the march, were confident the target had been met.For more information on the research or walks in your area, visit walkforals.ca.

Carol Skinner, who is living with ALS was in the lead in the ALS Walk that kicked off at the Canadian War Museum Saturday.

-Ashley Fraser

Walk for ALS - Lead Walker - June 13, 2015

My Speech:

Bonjour Good Morning,Today is about hope.My name is Carol Skinner and I was diagnosed with ALS on September 19, 2013, at 41 years old.

At the time, I was working at the Canadian Mental Health Association as an art therapist facilitating groups for individuals with severe mental health and substance use issues. I was proud of the work I did, and good at it too! I had been having some falls and stairs were getting difficult to climb. When I would go for my favourite Chai Latte across the street from work, it became harder to dodge traffic! One afternoon I left work early for a medical appointment, to have an EMG. I thought that the needles in the muscles was going to be the worst part, but of course, the diagnosis of ALS was unimaginable and one that changed mine and my husband Travis’s lives forever.

As you well know, ALS is a devastating illness with no treatment, no cure, and one that leaves us as who we are on the inside, while taking away our physical abilities. Day by day, we discover things we can no longer do. Some markers for me were not being able to get up of the floor, keep my balance or even step up onto a single curb.I used to be an adventurous person, I swam with sharks, pet cheetahs, and have gone spelunking. Now, I live in fear of even going outside not knowing what I can and cannot do. There are many times when I feel like I’ve lost myself and who I am altogether. That’s where you come in. The times when I feel that I am not brave, or strong, and that I cannot handle this, I am surrounded with love and support from friends and family telling me that I am an inspiration to them.

I feel privileged to have been asked to be the lead walker this year as I have been struggling with how to find a sense of purpose after my diagnosis. This is the most meaningful speech I was invited to give because I am here to thank you for being here.Your support means more to us living with ALS than you can ever imagine. This is where we find hope.

Thank you to the caregivers, who tell us that we are worth it, that it is a privilege to help us, that you want us to stick around! And for those of you here today walking for those who have passed, I am so impressed that you honour their memory by continuing to fight against this oppressive disease.Thank you to the volunteers, who work diligently to raise awareness for ALS. It takes months to make days like today a success.Thank you to the ALS Clinic who treat us with compassion, kindness, a sense of humour and respect.

The past year has been incredible for those of us living with ALS in inspiring hope, because of the increase in awareness and advocacy in two significant ways.The Ice Bucket Challenge happened during my first summer with ALS and it was encouraging to see such a worldwide show of support and solidarity. My personal favourite was Kermit the Frog’s! Before, when wearing my leg braces, people would ask me what happened and when I would get better, they did not comprehend when I told them that I wasn’t getting better, in fact, my nerves and muscles were quitting on me and that I would die from this, and soon. Now when people ask, I mention the Ice Bucket Challenge and a lightbulb goes off, “Oh, yes, I did that!”. It raised 17 million dollars towards research and client care in Canada alone and increased the public’s understanding of ALS. It raised awareness for the whole world and my hope is that the millions of people who participated continue to be engaged with ongoing efforts that will impact the ALS community.

Thank you for being here to continue to raise funds to feed research. Those of us living with ALS are desperate to maintain some sense of hope, and for that we need your help.Thank you to the researchers who work towards making ALS a treatable, not terminal illness.Thank you to all of those who advocate in support of ALS. Due to the tenacity of the ALS Society of Canada and Brian Parsons the Government of Canada extended the Compassionate Care Benefit from 6 to 26 weeks, a benefit that will directly provide financial assistance to Canadian families caring for a loved one with a terminal disease.

Thank you to friends and family who have not given up on us, and who remind us who we are beyond ALS.

And

For my community of friends living with ALS, I will leave you with a favourite quote of mine from the movie The Shawshank Redemption:“Guess it comes down to a simple choice really. Get busy living, or get busy dying”.I choose embracing life.

Rogers TV - Thursday June 11, 2015

Ottawa Citizen - June 10, 2015

On Sept. 19, 2013, after a needle probed her wonky muscles, Carol Skinner was given the test results straight away: Her life was ending, soonish and cruelly.ALS, or Lou Gehrig’s disease, the neurologist said. Count on two or three years, maybe five. And they will not be great ones — so ready yourself, travel, move houses, right now. She stopped working the very next day. Husband Travis called her parents, who were on a Mediterranean cruise — she could barely form words — and they jumped ship, flew home.“My career was ripped from me, my home was ripped from me, my future. It was devastating.” She smiles keenly as she says this, a habit or defence she’s picked up, all the more to break your heart.Montreal-born, the youngest of three, Skinner is 43. She walks with lower leg braces now and can manage short distances; otherwise there are manual and electric wheelchairs to get around. All in all, she is holding up fairly well, though she can feel the advance of the muscle disease, for which there is no cure.Who ever thinks about time, whether we have bushels more, or just drops? The terminally ill do. And Carol Skinner wants to concentrate on the living part, not the dying part.“After the diagnosis, I kind of lost a sense of purpose. And that’s not me.”

Carol Skinner and her husband, Travis, on their wedding day in 2009. Her advice for others? ‘Live your passion now.’

Letters to the Editor

Skinner, a McGill graduate, is a natural leader. She was a longtime camp counsellor and, at the time of diagnosis, was an art therapist with the Canadian Mental Health Association, working with some of the city’s most vulnerable citizens in group settings.So, sitting still was not to be. She agreed to be a lead walker and spokeswoman for ALS during the annual fundraising walk on Saturday that leaves the Canadian War Museum at 11 a.m. (www.walkforals.ca/ottawa for more info.).Travel has always been a passion of hers so, with the financial help of family, she hit the road. You can see a great deal in two years: Thailand, Singapore, Hong Kong, Japan, San Francisco, Antigua, Mexico, Italy, the Mediterranean, bringing her life travel list to about 30 countries.“Live your passion now,” she said Tuesday in her new Kanata apartment. “Don’t wait. Live for the now.”She discovered she had the remarkable support of extended family. Travis, a chef, is originally from South Africa. His brother Dayne and Dayne’s wife Kate have actually moved to Ottawa from New Zealand for a year to lend a hand.“Talk about heart? They gave up their whole life, moved across the world, rented their house, sold their car. How do you repay that?”Carol also became an active blogger (livelovelaughwithcarol.com). One of the more insightful categories is called What Would You Do? — a reference to living under a deadline. There were some remarkable entries from family:“I would give myself the right to be selfish.”“Have babies that you will meet. Nothing would make me happier.”“You know that if you have a job to do that takes a day, but get given a week, it takes you a week to complete. I’ve been taking a long time to do the JOB of Living.”All of which to say this: Carol’s illness has spread a different kind of urgency through her circle of family and friends, a resetting of life priorities, be you sick or well.“I can’t say that I’ve accepted it. I still break down. I still am angry but, at the same time, now I feel blessed,” she said of the outpouring of support. “I’m very lucky.”ALS, or amyotrophic lateral sclerosis, is a disease that attacks the nerve cells and leaves muscles paralyzed. There is no cure and little treatment. The need for funding is great: it can cost the average patient $150,000 out of pocket.Skinner said she first noticed something was wrong in 2013 when she began to trip unexpectedly from a “dropped foot” condition. An active person, she began to suffer fatigue and avoid stairs. She noticed her cup was shaking during tea breaks. She fell in Billings Bridge Shopping Centre.There were tests and more tests, an eventual trip to neurology. After diagnosis, Carol and Travis put their Crystal Beach condo on the market because it had a second floor. They moved to an apartment in Kanata, then moved again when a unit came available with a walk-in shower. It will be like this to the end: Constant adaptation. The couple are grateful for the federal government’s expanded compassionate care leave, which they will need.“My philosophy now is to just keep doing things until I can’t and not wonder about ‘what if’.”

CTV News - June 1, 2015

ALS Awareness Month Flag Raising - June 1, 2015

Mayor Watson proclaiming June as ALS awareness month in Ottawa at this mornings flag raising ceremony.

My Speech:

My name is Carol Skinner and I was diagnosed with ALS on September 19, 2013, at 41 years old.

As this ceremony represents ALS Awareness, I am here to tell my story, to share the effect ALS has on my life.

The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. It is an unwanted anniversary, a marker of shock and fear, a countdown of the years, months, days, minutes that we have left.

I woke up that day without a clue as to how my life would change. I went through the dreaded needle in the muscle test and the neurologist kept saying "I'm afraid to say this is quite serious". My husband Travis & I were trying to focus on what the doc was telling us…no tumours...no blockages...sound back...sound brain...nerves going to muscles...motor nerves not affecting sensation...degenerative condition...motor neuron disease...lou gehrigs disease…no known reason….ALS...progressive..no treatment…no cure...nothing triggered it....shortened life...2-3 years…

I must admit, before that day, my awareness of ALS was limited, so of course we did what the doctor told us not to do after that appointment, we went home and googled ALS, in that moment, our spirits were crushed.

Of course this is a devastating tragedy for Travis & myself, we lost our home as we had a two floor walk up and I cannot do stairs so we moved into an accessible rental. I am losing my body, in a way that is terrifying as day by day there are activities of daily living that I can no longer accomplish on my own. I have lost my career that I was very proud of. I was an art therapist facilitating groups for individuals with mental health and substance use disorders at the Canadian Mental Health Association. I am losing control (which is particularly difficult for someone who is known to have control issues!), and we have lost our future dreams. ALS is an illness that is at the forefront of your thoughts 100% of the time.

The Ice Bucket Challenge happened during my first summer living with ALS and it was wonderful to see such a show of support and solidarity. Before, when wearing my leg braces, people would ask me what happened and when I would get better, they did not comprehend when I told them that I wasn’t getting better, in fact, my nerves and muscles were quitting on me and that I would die from this, and soon. Now when people ask, I mention the Ice Bucket Challenge and a lightbulb goes off, “Oh, yes, I did that!”. Though the Ice Bucket Challenge made a difference financially and in the public’s understanding of ALS, we have a ways to go. I am here to plead with you to spread awareness which leads to motivation to act, to fundraise, to join and or sponsor the ALS walk, and other events. We need to continue to raise funds to feed research. There is a sense of urgency with this illness that is neither treatable nor curable. Those of us living with ALS are desperate to maintain some sense of hope, and for that we need your help.

In the almost two years of living with ALS my husband and I have come to realize that we are blessed. Our friends and family have surrounded us with love, we have made it a priority to travel while I still am able and we have been trying to seize the opportunity to make moments matter by appreciating what is really important in life. I have had a chance to reflect on my life and be proud of my accomplishments of giving back and making a difference in this precious world.

Metro News Article - May 29, 2015

Carol Skinner skated circles around her South African husband when she first took him to the Rideau Canal. But when they hit the ice again the following year, her legs stopped working.

Her stumbling continued off-ice. She fell in the airport en route to her brother-in-law’s wedding and she collapsed again on the dance floor.

On Sept. 19, 2013, after doctors’ visits and tests, she was diagnosed with Amyotrophic Lateral Sclerosis (ALS) – the terminal progressive disease characterized by muscle paralysis. If you recently dumped a bucket of ice water on your head for a charity video, then you may be aware of the condition also called Lou Gehrig's disease.

The day of her diagnosis, Skinner quit her job as an art therapist with the Canadian Mental Health Association and went on long-term disability. With her husband, Travis, the pair sold their two-storey condo and moved to Kanata. The 43-year-old shuffles around on leg braces and uses a wheelchair when they go on cruises, like when they went to southeast Asia last April.

“I love travelling and we’re trying to do that as much as we can,” she said. “It’s getting more difficult with the loss of my muscles and my muscle strength.”According to Lianne Johnston, regional manager of ALS Canada for Eastern Ontario, 2,500 to 3,000 Canadians are living with ALS. Almost half – 1,000 – are in Ontario. The ALS Ice Bucket Challenge drummed up almost $16 million for research and support last summer.

"I don't want to say it was a fad. It was bigger than that," she said. "It was so supportive and we need things like that to keep going."

Skinner will be the lead walker for the Walk for ALS on June 13. There will also be a flag-raising to commemorate ALS month at City Hall on Monday.

In her initial appointment, Skinner was given two to three years to live. This September, two years later, she plans on hosting a party.

“I’m going to celebrate it as much as I can,” she said.

-Lucy Scholey

Media Release - May 2015

Carol Skinner, is 43 years old and lives in Kanata with her husband Travis. They have been married for five years.

Carol used to love to hike … and dance … and be active. Travis will tell you she loves reggae.

On September 19th, 2013, at the age of 41, Carol received devastating news. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS).

ALS, also known as Lou Gehrig's Disease, is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. Every day two or three Canadians die of the disease.The average life expectancy after diagnosis is three to five years.

Carol has a Masters in Art Therapy and, until her diagnosis, worked for the Canadian Mental Health Association counseling clients and training people in the community to help individuals with substance abuse and mental health issues.

Prior to becoming a therapist, Carol worked for the YMCA for ten years. She started as a camp counselor and grew to become a camp director. Carol is a recipient of the YMCA’s Outstanding Service to Youth Lifetime Achievement Award.

The first thing one realizes after meeting Carol is that she is a truly loved woman. With her husband by her side and her family from New Zealand having taken up residence in their home to care for her, she and Travis feel blessed. They are surrounded by friends who help them in any way they can.

Her blog (www.livelovelaughwithcarol.com) provides her with a venue to keep friends and family up to date with her life and the ongoing progression of the disease.

Still a vibrant, outgoing woman, Carol says that she has watched herself go from an adventurous person to living in fear. Now she can only walk a few steps at a time, with braces on her legs, and cannot carry anything or get up if she falls.

Her first symptoms began to appear in February of 2013, when she had difficulty skating on the Rideau Canal. At first, Carol, who had always been the one to “push Travis around on the Canal,” thought she needed to get fit again after a long winter so she began to exercise. She tried walking and running to get fit but began to trip and fall.

After a series of events where Carol continued to lose her balance, she sought the advice of a doctor, who referred her to a neurologist. It was then that she and Travis were given the devastating news.

Carol has had to make many adjustments in a relatively short time. She has had to leave her career behind. She and Travis have had to sell their first home together because it had stairs. They have lived in their Kanata apartment for less than a year and are moving again at the end of May where the new apartment layout will accommodate her wheelchair.

Since her diagnosis, Carol has become a strong advocate of the move to increase compassionate care benefits, part of an existing EI plan, from 6 weeks to 26 weeks. She says the new plan will mean a great deal to her and Travis.

However, ALS advocates will tell you that six months is not enough. Time is precious and it is difficult to predict how quickly, or how slowly the disease will progress. This can place an incredible strain on families and caregivers.

“We’re taking it day by day and are appreciating what we can.” She says. “You have to live for the now and appreciate what you have – make it count.”

-Noella LeBlanc

Compassionate Care Benefit Increase Announcement - May 13, 2015

Members of the ALS Canada team were present on May 13 in Ottawa as the Honourable Rona Ambrose, Minister of Health and the Honourable Candice Bergen, Minister of State for Social Development, on behalf of the Honourable Pierre Poilievre, Minister of Employment and Social Development, highlighted increased financial support proposed for individuals taking care of family members facing a terminal diagnosis.

My Speech:

I was diagnosed with ALS on September 19th, 2013 at 41 years old. I was given a timeline of two to five years left in my life. This September I plan to have an “I’m still alive” party and you are all invited!

My husband Travis couldn’t be here today as he is at work to pay our ever increasing household bills. I am no longer able to work and we’ve had to sell our home to move into an accessible rental.

ALS, being a degenerative disease is terrifying for me and my family to live with. My progression is increasing at a rapid pace as I can no longer walk for more than a few steps, carry anything, or get up by myself after a fall.

When the Compassionate Care Benefit was at 6 weeks we would have had no idea when to use it as no one knows when my last 6 weeks will be. Do we use it now while I need help with daily activities? Or when things are at their worst? How will we know when that is? What if I live past those 6 weeks, how do we keep paying our bills? Most likely we would not have had the chance to use it at all.

This extension to 26 weeks provides my husband with the opportunity to care for me not only physically but also much needed mental and emotional support while relieving some pressure off our monthly bills. I cannot get through this alone. I am trying my best to fight, and I really need my husband by my side in this short life I have left. That is what compassionate care means to me.

I would like to thank everyone who has worked for the Compassionate Care Benefit Increase and made it happen. Especially ALS Canada and Brian Parsons for their awesome advocacy. On behalf of those of us who are suffering, thank you for making this necessity become a reality.